How many of you are transfusion dependent?

[txnmomma]

I just was wondering who all is transfusion dependent? [getting blood tranfusion regularly]

My father is having to have blood transfusion about every 3 weeks. He has taken Procrit, Thalidomide, and Danazol. None of those worked.

He has take Dacogen for 2 rounds, waiting to see if it worked.

Mainly, his lifeline is constant blood transfusion.

[gj]

In about the last 5-6 months, I have become more blood dependent. Usually getting platelets between every 5-7 days and one round(2 units) of reds sometime between Dacogen treatments.(Begin Dacogen #11 ext week)
One thing to keep on the watch for is as your dad’s transfusion units get around the 20 range, you might want them to start checking for iron overload as that can become a significant problem.
Good luck
gj

[Alice S]

Hi Wendy
Mom has been transfusion dependant since December 2004. At first it was every 4 to five weeks. After treatment with EPO (Procrit)March/April 2007, she now has to tx every 10 to 14 days. To date she has received over 100 units of blood.

As you will see from the footnote, Mom has iron overload, but it seems not to be causing any damage to her internal organs. So far so good, but take each day and each week as it comes.

Take care

[jga_socal]

Wendy, I was rbc transfusion dependent from Jan 2006 until around Jan 15 2008. I havent needed a transfusion since Jan 15. Getting transfusions was an event that increased in frequency over the timeframe, presumably as my mds progressed. My rbc needs were around 2 units every 5 weeks to start. By last Dec. I was getting the max, around 2 unit every 2 weeks. During a 10 day period in January I was getting 1 to 2 units per day as my old blood type died off due to chemo.
Generally, a person loses 1 unit (1 pint) per week and the marrow creates 1 unit per week. So if you need 2 units per 2 weeks that means your marrow is no longer producing viable rbc blasts.
Procrit may have worked for me, weekly shots. But I wonder if it also increased the speed of the rbc shutdown process. There was no magical rise in my hemoglobin count during the 1.5 years of my procrit treatments.
This info is not of the sort that raises ones spirits. [ HERE ] may be a better way to look at the transfusion experience.
Hang in there with your Dad. Take care.

[jaxem]

wendy
my wife never got response from procrit, etc. either. depending upon what treatment she’s getting which all destroy good cells, she’ll get hemoglobin every 2 weeks & platelets usually every week & 1/2. don’t depend upon dacogen working after only 2 rounds. you need at least 4 & 6 is preferable. if he’s on dagogen, he’ll need transfusions regularly.

[Russ P.]

Wendy, I also did not get a response to Aranesp which is like Procrit. My Hemo/Onc kept pushing it untill I showed him a chart I made showing when I got the Aranesp and the HGB values. He ran an EPO test and it showed an ample supply in my blood. I believe the shots may have hastened my AML and yet I have a friend that only gets the Aranesp for his treatment as it raises his HGB. Blessings,
Russ

[Becca11OU]

My husband gets regular RBC transfusions. Sometimes he goes every week or even more often on occassion when he’s in the hospital and they get really low. Recently the longest stretch of times he’s gone is about 3 weeks. We have decided not to transfuse until his hemoglobin is in the 7’s because he has to get them so frequently. The doctors originally recommended for him to get them in the 8’s, but as long as he is feeling okay we try to hold off.

[Jack_dup1]

I just started my 3rd cycle of dacogon. BMB after 2 rounds show blasts have dropped from 14.1% to 1.4%, cellular activity from 100% to 95%. Counts have returned to normal, my whites keep wanting to increase(13.8 today)
Jack S

[bobweinberg]

Wendy, just to add my name to the list, I have been transfusion dependent since May of 1998. Frequency of txs intitially was 4 weeks, but by one year it became 14 days, and now, 10 years after diagnosis, I receive txs every 10-12 days. I did have a break last year for 7.5 months from taking Vidaza, but it has lost any effectivenss. I have chelated religiously, first with desferral from a pump and now with 3000mg of Exjade daily.

Thank God for whoever thought of transfusing blood.

[bobweinberg]

Wendy, just to add my name to the list, I have been transfusion dependent since May of 1998. Frequency of txs intitially was 4 weeks, but by one year it became 14 days, and now, 10 years after diagnosis, I receive txs every 10-12 days. I did have a break last year for 7.5 months from taking Vidaza, but it has lost any effectivenss. I have chelated religiously, first with desferral from a pump and now with 3000mg of Exjade daily.

Thank God for whoever thought of transfusing blood.

[txnmomma]

Quote:

Generally, a person loses 1 unit (1 pint) per week and the marrow creates 1 unit per week. So if you need 2 units per 2 weeks that means your marrow is no longer producing viable rbc blasts.

This is so informative. Thank you!! I will pass this on to my dad. I need to go back and look at the calendar and check on the frequency of his blood transf.
I have young kids and am a stay home mother. So at times, I get caught with my life as a mom, and dont keep track of his blood transf. Shame on me!

[txnmomma]

I am glad to hear my dad isnt the only one needing blood all the time.
He generally receives 2 units. If his RBC gets below 7 he usually will get 3 units. He averages ever 3 weeks, but I am really curious to get back and see the exact dates.

I am trying to learn more about MDS and how it affects the body.

[txplumber]

I have MDS. Rec’d my first transfusion April 11, 2008. Have rec’d 26 pints of blood since than. So tired of the needles. I started on Revlimid 7 days ago

[txnmomma]

Roger..
When were you dx’ed with MDS?
I got your email. THANK YOU!
I am wanting to look at your website more and more. It helps to know others with MDS. I have been researching ALOT about MDS

by the way, we used to live right outside houston, in Clear Lake, a few years ago. I miss Houston!

[Laleigh]

My husband was dx with MDS 12/05. He had his first transfusion 12/5/05. The next transfusion was 11/06. Since then they have been pretty regular. He was on Aransep for many months then the doc changed to Procrit. He did not respond well at first but then he did great. With only 1 trans per month. Then the doc started playing with the meds again and took him off procrit and started aranesp. It did not work so we BEGGED him to restart procrit. He did but by then it didn’t want to work. So he is trans dependent. Has had over 65 transfusions and will have another one early next week. He is also a heart patient and when his HGB gets below 10.5 his cardiologist recommends that he gets blood. He is working with the oncologist. It seem like every week we have a new crisis. We are on the list (since May) to start low dose decogen treatments at MD Anderson in Houston. Like everyone else my guy is tired of the needles. I would have given up a LONG time ago, but he keeps going. The one thing that he does that breaks my heart is apologize everyday for being a burden. He is not nor has he ever been a burden. I have been married to him for 40 years and have know him since we were 9 years old. He is truly my soul mate and have never given it a second thought about helping him through this. I believe I vowed, in sickness and in health.

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